Dementia sufferers feel like they are 'trapped in their own homes'

A new report by the Alzheimer’s Society has revealed that many with dementia feel trapped in their own homes with one in three only leaving their homes once a week. Health Correspondent Julia McWatt looks at what can be done to support them

Thousands of people with dementia are becoming trapped in their homes because of a lack of support in the community, according to the Alzheimer’s Society.

In a new report, published today the charity says that one in three people (35%) with dementia only leave their homes once a week and one in 10 get out just once a month.

The organisation says that many people with dementia feel let down by their communities, with almost half (44%) of people with dementia feeling like a burden and avoiding getting involved with local life.

The general public also recognise the issue, with 59% of adults saying the inclusion of people with dementia in their communities is bad.

Now the charity is calling on more neighbourhoods to take action to help reduce the stigma surrounding the disease and support and improve the lives of people with the condition.

Sue Phelps, director for Alzheimer’s Society in Wales, said: “It’s shocking and saddening that so many people with dementia feel trapped and cut off from everyday local life.

“It’s a priority for us all to act now to make changes that will empower people with dementia and help them live well in their communities. By 2021 there will be one million people in the UK living with dementia.

“By committing to change, communities can give people with dementia the confidence to be part of their local community and live independently for longer.”

It is estimated that around 44,000 people in Wales are currently living with dementia, but the Alzheimer’s Society believes that this figure could be much higher as people are often too worried to get a formal diagnosis.

The charity has said that the number of people with the condition is predicted to rise by 34% by 2020.

The society is now working in partnership with organisations including the Welsh Government and the Older People’s Commissioner to support the creation of dementia supportive communities.

The communities are cities, towns or villages where people with dementia are understood, respected, supported, and confident they can contribute to community life.

Meanwhile, the Ageing Well in Wales Programme, hosted by the Older People’s Commissioner for Wales’ office, has launched new networks to support the sharing of knowledge and innovation across the public, third and independent sectors in Wales.

Older People’s Commissioner for Wales, Sarah Rochira, said: “Older people I have met and spoken with across Wales have shared their concerns with me about the devastating impact of loneliness and social isolation, and similar concerns are reflected in this report.

“Older people, like any of us, just want the best quality of life – friendship and contact with others, and care and support should they need it. By developing dementia supportive communities, we have an opportunity to radically change the landscape for older people living with dementia in Wales.

“It is vital that people get involved and commit to making small changes in their local communities, which is why I’m delighted to be working with Alzheimer’s Society, and a range of other partners through the Ageing Well in Wales programme, to help build dementia-supportive communities across Wales.

“All older people have the right to have the best quality of life, to lead lives that have value, meaning and purpose, and getting it right for people with dementia will go a long way in making sure we’re getting it right for everyone.”

Justine Pickering, founder of the Barry-based Alzheimer’s respite care centre T Hapus, said it was vital that people with dementia feel well supported.

Ms Pickering, who founded the centre after her mother Annie, was diagnosed with early-onset Alzheimer’s disease when she was 55, said: “I set up T Hapus so people were able to feel supported and had somewhere safe to go. I wanted to make sure people were not isolated. My mother had early onset dementia and taking her out to eat and doing anything nice like that became a real challenge before we set up the centre.

“I think dignity and respect is vitally important for people with dementia and what is often found is that it is hard to go out in public because it manifests itself in such different ways in different people that many people do not understand it. There is still a stigma around dementia and I think the findings in the report are so saddening.”

Graeme Francis, Age Cymru’s head of policy and public affairs, said the findings in the report were worrying.

He said: “In 20 years’ time, one in three of us will develop some form of dementia and this report clearly shows that society needs to address the way that it is currently failing people who have dementia.

“Age Cymru is particularly concerned by the report’s findings that many people feel let down by their communities and worry that they are a burden. We believe that dementia-friendly communities are essential to avoid people becoming increasingly isolated and cut off from local life.

“Making our communities age-friendly must be a priority for the future, as must meeting the needs of people who have dementia.”